Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Thursday, November 17, 2011

Day 46 of Feeding Tube - Cardiologist Appointment (new EF%!)

We had another cardiologist appointment today with Dr. Callahan and it went well.  For this appointment I made sure that I went prepared.  He got his feeding in the car on the way to the appointment so he wouldn't get hungry while we were there, I brought extra food just in case, I brought bottles, pacifiers and an extra change of clothes in case he threw up.

Our appointment was at 11:00 am and I only ran into one small traffic jam.  My dad came to our house and watched Cole for me so that I could focus on the appointment.  The first thing they do at each appointment is weigh him... he was 16 lbs 2 oz.  He's gaining weight nicely!  Then he had his EKG... which I don't know the results of but I'm sure it was ok because no one said anything about it.  Right after his EKG Trey puked all over me.  If you recall... I thought I went prepared... but um, no, I didn't bring a change of clothes for myself!  He threw up twice in the EKG room.  It was pretty surprising because during his EKG he was all smiles and coos. I wasn't expecting the mess that followed.


After his EKG we moved over to another room so that he could get his echocardiogram.  He proceeded to throw up in that room twice, again... the first time was all over the bottom of my shirt.  Thankfully I can pull off puke pretty well.  Not too many people can do that you know, but the extra 10 pounds I've gained on top of baby weight, the acne from stress and the thinning hair from stress and after baby hormones really highlight the throw up.  I'm telling ya, I belonged on the front of Parenting magazine!


His echo went well and he was only a tiny bit cranky.  They put Baby Einstein on the TV for him to watch but he seemed more into watching the echo wand go across his chest.  Dr. Callahan said that he thought Trey's heart looked good on the echo and finally we got to the number I had been waiting for since last month.... his ejection fraction percentage.  Remember, "normal" EF% is around 70%.  Trey went into Inova with a 7% EF and he left Inova with an EF of 30%.  At the cardiologist appointment on October 20 the % was at about 28.  On October 25 at the Montgomery General ER it was the same.  Last night David and I took bets on what his EF% would be.... I was a little more pessimistic and bet 31% and David was a bit more optimistic and bet 40%.  Dr. Callahan joined the gamble today and bet higher than 21% (that was a cop out!).  Today, November 17 it was..... wait for it...  the suspense is killing ya, right?!....  so who won the bet...  ok it was...  click here!

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